Hypothyroidism Support Group

Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...

Medication

Hello, I have hypothyroidism as part of a polyendocrine disorder and so I have other endocrine conditions.

I have had hypothroidism for 11years, I was given thyroxin and have been taking 75mcg for all of this time although sometimes I have been told to take 50mcg depending on my blood results.

Recently I have been feeling unwell with the symptoms of hypothyroidism and my weight has increased so that I have gained just over a stone. I have a very small appetite and eat healthily and so I know that it not down to my food intake.

My blood test results for T3 and T4 have always come back within the normal range. I read a recent article however about a lady who had been taking thyroxin for many years and then similarly her weight increased for no reason. She was turned away from her doctors as they told her she was middle aged and her weight gain was to be expected. Unhappy with this she researched on the internet and discovered about T3 medication which is controversal here in the UK. She also discovered that it was more expensive than thyroxin which is why she was probably not prescribed it.

She managed somehow to get it on a private prescription from what I understand and after taking it for just a month she noticed the positivities. Her weigh started to return to normal and she felt full of life.

I am wondering whether by taking T3 as opposed to thyroxin that this might help me. I have been researching on the web and read about a synthetic T3 Lyothronine and I have also read about Armour.

My endocrinologist refused to let me try the T3 replacement and has basically told me to deal with my weight and accept it. I would gladly pay for T3 replacement however was not sure how to go about this and what dosage to take when my endo will not prescribe it for me.

Has anyone else had this experience with thyroxin? Grateful for any help and advise...

Hi Cathy, I've had a similar problem, although am in the Netherlands (originally British). About a week ago I posted the post below. I'm still debating what to do - I have an appt with the doc 6th Sept and will ask him to refer me to an endo for the Hashi.

I'm on 125 Thyrax (same as your Thyroxin I think) and would lower that to 100 and add 5 (which is a low dose) of Cytomel (T3) to see how it goes - maybe up it to 10 if I needed to. I might try that before the Armour (which is natural T3 and T4) if docs refuse to prescribe.

'...Hi guys,

I havent posted for a few days, but I could really do with some advice/sympathy. Ive now been on Thyrax (same as your Synthroid in the US I think) for almost a year and there seems to be minimal improvement. In fact some things have got worse! I feel horrible and, as you know, am also dealing with Hereditary Hemochromatosis and that and Hashis have many symptoms in common.

Anyway, here are my ongoing problems:

Heart palps no better (hours a night sometimes) despite beta blockers (this could also be caused by the Hemochromatosis).
Carpel tunnel worse (wake at least 20 times a night with numb, tingling hands).
Still chronic fatigue, no matter how long I sleep (also a symptom of HH)
Still gaining weight
Throat feels tight, closed and is swollen
Difficulty swallowing.
Coughing fits (mostly at night.)
Frequent headaches (never had before) think may be a side-effect of the Thyrax.
Soles of feet hurt (this is a new symptom!)
Itchy scalp.
Still horrible gastric problems (dismissed as IBS)
Still strange lumps/marks on arms and legs.

Disorientation/brain fog/dizziness is slightly better although still present.

Now my current specialist is a haematologist and is primarily treating me for the HH (which almost certainly caused the Hashi), so hormones are not strictly his field. Anywayhe says a thyroid scan is not necessary (despite symptoms above), doesnt want me to try Armour and practically threw up his hands in horror at the mention of Cytomel (which he seems to think is only for bodybuilders who illegally use it to gain muscle mass). He dismisses the headaches (advises Paracetamol!).
I have to say hes pretty knowledgeable about the HH, although my ferritin has shot up dangerously recently and I am supposed to have 3 phlebotomies as close together as I can handle them, but cant because my blood is so thick it wont flow.
Im trying another phleb tomorrow and in 2 weeks blood will be drawn for ferritin, liver, iron sat etc and also TSH, FT3 and FT4. 2 weeks after that I have an appt with blood doc. I will ask him to refer me to an endo for the Hashis, but am afraid he will refuse, saying he is capable of treating me and that I should be patient (he said it can take up to a year to feel better). He will at least ask why I want to see an endo.

The thing is, I am feeling so miserable and depressed that if he does refuse, I am seriously thinking of buying either Armour or Cytomel online and self-medicating. Which one do you suggest I try first? A Thyrax (Synthroid)/Cytomel combo, or just the Armour? And what sort of dose? I am currently on 125mcgs Thyrax only.

Either way I can hardly feel worse than I do at the moment.

So sorry, for the long, rambling post, wanted to get it off my chest (so to speak)...'

Many thanks for your advise, I sympathise with how desperate it makes us feel that we have to resort to buying online, and when are symptoms are dismissed. I read the symptoms which you listed in your previous post and I could relate to these, I have copied below which ones that I have.

Heart palps - I have been getting these, almost like a panic attack and my face and chest go red.
Fatigue - I am finding that I am feeling un-naturally tired as if my hypothyroid symptoms have returned.
Still gaining weight - I am most definitely and it is very upsetting as my clothes don't fit despite eating healthily and with a very small appetite, and swimming to keep active. My endo told me to accept my weight and to stick to a low carb diet and that my thyroid was fine!!! (when I know it isn't)
Throat feels tight, closed and is swollen - I had this symptom at the weekend and it really frightened me. I had in fact increased my thyroxin for 2 days and thought that this might be the cause and so I have had to return to my lower dose.
Difficulty swallowing - I had this at the weekend
Frequent headaches - I have been having these and at the weekend I had a terrible sensation, I had like a fizzy feeling inside my head and I went quite faint, my face went read and this lasted about 5 mins.
Still horrible gastric problems - I have this too and my stomach gets so distended that it is hard to breath. I was tested for Ceiliac however this has come back negative and I have been told to get on with it.

I have actually managed to find the news article which I referred to and have managed to get in contact with the doctor who is helping people like us who feel that thyroxin isn't working and we are not being prescribed T3.

I have managed to get an appt with him however due to his popularity since the news article, he has been inundated with calls. My appt therefore is not until the end of November and it is a paying (private) appointment however I don't mind just so long as he can help me.

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